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It Is Not A Hospital Discharge… It Is A Community Admission. It Is More Than Health Care ... Fitting the pieces together. Socia l. Literature. $. Dev/Educ. Technol. OVERVIEW. Medical Home for CWD - a little different Working with the educational system

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it is not a hospital discharge it is a community admission
It Is Not A Hospital Discharge…

It Is A Community Admission

overview
OVERVIEW
  • Medical Home for CWD - a little different
  • Working with the educational system
      • IFSP and early intervention programs
      • IEP and the education system
      • ITP and transition to adulthood
  • Accessing community resources
          • parent educ, advocacy, support
          • community agencies
          • respite and recreation
          • financial
  • Educating the PCP
but a few more
But, a few more....
  • assessment tools
  • team members
  • community supports
  • minutes
  • dollars
medical home
Medical Home
  • traditional pediatric care
  • emphasizes a mutual relationship
  • broad health care plan
      • medical (traditional and non-traditional)
      • developmental
      • behavioral
      • educational
      • social
  • long range (infancy to adulthood)
components of any medical home mh
Components of any Medical Home (MH)
  • accessible
  • continuous (age & spectrum of care)
  • compassionate
  • comprehensive
  • coordinated
  • culturally competent
  • family-centered
slide8

Child/Family, includes family support resources

Pediatrician and other medical providers

School, includes early intervention

Community-Based Team

Insurance providers/financial resources

Religion /spiritual supports

Social Services, includes mental health

cwd additional components
CWD: Additional Components

Broader array of assessment tools

Awareness of community resources

Team Skills vs Care Coordination Skills:

  • medical and surgical subspecialists
  • social workers and home health nurses
  • therapists, orthotists, prosthetists, DME vendors
  • intervention specialists, teachers, ed diagnos
  • counselors, psychol, behavior mgmt specialists

Advocacy Skills:

  • authorizations for medical care
  • authorizations for school related services
  • financial assistance programs
  • public policy issues
the standard assessment
The “Standard” Assessment
  • History
      • Chief complaint
      • History of present illness
      • Pregnancy and neonatal history
      • Family history
      • Developmental and school history
      • Review of systems
  • Physical Exam
  • Screenings
      • hearing and vision
      • growth and development
      • dental
      • Hct, etc
beyond the standard assessment
Beyond the “Standard” Assessment
  • Developmental
  • Socio-emotional
  • Functional
  • Educational
  • Transitional
developmental
Developmental
  • AAP emphasis on the developing brain
  • Developmental monitoring
      • Screening
      • Surveillance
      • Assessment
  • Goal: Early referral to an early intervention program (EIP)
screening tools
Questionnaires

PDQ

AAP

EIP

Customized

Observation

Denver - II

ELMS

CAT/CLAMS

BINS

Dev Profile - II

Screening Tools
surveillance
Surveillance
  • The art of being suspicious
  • Parental concerns are valid!!!
  • Continuous monitoring at every visit
      • Pre-printed milestone checklists
      • Developmental milestone tables (texts/articles)
      • Use of standardized tools to validate suspicions
  • Developmental age for eachstream

developmental age

chronological age

> 85% is normal

70 - 85% is suspect

< 70 %is abnormal

examples
EXAMPLES

10 mos old w/ GM skills solid to 8 mos

8 mos = 80%

10 mos

10 mos old w/ GM skills solid to 6 mos

6 mos = 60%

10 mos

developmental assessment
Developmental Assessment
  • Targets children at risk
  • Time consuming
  • Requires training and expertise
  • Often performed by a team
  • Assesses quality as well as skill level
  • Addresses etiology (neuro, genet, etc)
functional assessment
Functional Assessment
  • Follows developmental assessments
  • Assesses the child’s ability to perform skills independently w/wo devices
      • Mobility
      • Communication
      • Self Help: feeding, dressing, hygiene
  • Standardized tools
      • Vineland
      • WeeFIM
      • PEDI
      • AAMR
early intervention programs
Early Intervention Programs
  • Available to infants from the time of diagnosis until age 3 years
      • Known disability
      • Developmental delay
      • At risk for disability or delay
  • Promote development & family function
  • Mandated by the IDEA entitlement
  • Large menu of services
      • parent education, empowerment, advocacy
      • habilitation services (OT, PT, ST, behav mgmt)
      • assistive technology
      • respite, transportation, etc
evolution of iep s
Evolution of IEP’s
  • Privately funded . . . . Publicly funded
  • Open referral . . . . . . Geographic assign
  • Multidisciplinary . . . . Transdisciplinary
  • Center-based . . . . . . . Home based or DCC
  • Child centered . . . . . . Family centered
  • IDP. . . . . . . . . . . . . . . . .IFSP
eip pediatrician s role
EIP:Pediatrician’s Role
  • Referral - early, don’t wait for DX

- “48 Hour Rule”

  • Medical assessment
      • etiology vs co-existing disorders
      • subspecialty consultations
  • Care Coordination
  • Development of the IFSP
  • Authorizations for treatment
  • Education of providers re: diagnosis
  • Communication and monitoring
transition to school
Transition to School
  • Occurs at age three years
  • Individual Education Plan (IEP)
  • Based on an educational assessment
  • Physician advocacy

may be necessary

educational supports
Educational Supports
  • Re-authorization of the IDEA (1997)
  • Entitlement: DX 21 yrs
  • Special education techniques & staff
  • Related services (PT, OT, ST, RN)
  • Assistive technology
  • Extended year services
  • Non-educational services
  • Transitional services
components of an iep
Components of an IEP
  • Current level of functioning and DX
  • Goals and objectives for school year
  • Related services needed to goals
      • special education
      • therapy (PT, OT, ST) and nursing
      • assistive technology devices
  • Frequency, duration and provider of related services
components of an iep24
Components of an IEP
  • Placement (LRE philosophy)
  • Supports needed for LRE placement
  • Transitional services - if > 14 years old
  • Extra curricular activities
      • Respite (“non-education funds”)
      • Extended year services
      • Recreation
  • Monitoring of progress
      • Tools
      • Frequency
  • Signatures
physician s role in the iep
Physician’s Role in the IEP
  • Authorize for svc via medical categories:
      • Other Health Impaired (ADHD, CHI, SZ)
      • Orthopedically Handicapped
      • Vision and/or Hearing Impaired
      • MR diagnoses (Down, FXS, William\'s)
  • Advocate for psychometric testing
  • Evaluate for co-existing health concerns…..authorize medical Rx
  • Coordination of services
  • Communication and educ (med<-- >EIP)
  • Advocate for related svc & assist technol
slide26
Medically-based Therapy
  • health care service requiring physician Rx
  • requires insurance/HMO pre-authorization
  • addresses periodic life issues
      • new equipment (braces, crutches, W/C)
      • post surgical
      • transition to oral feeding

Educational-based Therapy

  • provided at no cost (gov subsidized)
  • usually consultative
  • addresses devel and educ milestones
  • driven by the IFSP services at home
  • driven by the IEP services at school
assistive technology
Assistive Technology
  • Purpose:to prevent (or decrease) deformity

to increase function

  • Timing is critical and depends on DD
  • Low tech vs. high tech devices
      • Positioning
      • Mobility
      • ADL (activities of daily living)
      • Communication
      • Educational
      • Recreational
  • Service animals
assistive technology clearing houses
Assistive TechnologyClearing Houses
  • Abledata
  • RESNA
  • Alliance for Tech Access
  • TRACE
computer technology
Computer Technology
  • Apple: 1-800-600-7808
  • IBM: CAT (Center for Adapted Tech)

Easter Seals in Colorado

Phone: 1-303-233-1666

Fax: 1-303-233-1028

  • RJ Cooper Software

24843 Del Prado

Dana Point CA 92629

service dog information
Service Dog Information
  • Houston: (281) 497-2505
  • Austin: (512)891-9090
  • Website: www.THSD.com
transition
Transition

School Work

Home Community

Pediatric Adult Care Centered Care

school work
School Work

Background: PACER Center

  • ADA (1990)
  • Rehab Act (1992):“supportive employment”
  • IDEA (1990 and reauthorized in 1997)

Individualized Transition Plan (ITP)

  • supplements or replaces the IEP at age 16
  • student becomes a member of the team
  • identify vocational goals
  • addresses training (OJT and volunteer)
  • community agencies and services
  • rehab counselor is important team member
  • evaluation of progress
home community
Home Community

Training (informal &/or formal ILS classes)

  • early responsibility for self-care, hygiene
  • behavior, social skills, and leisure activities
  • homemaking (cooking, cleaning, laundry)
  • financial and budgeting
  • public transportation or adaptive vehicles
  • interview, hire, supervise & fire attendants

Settings: LRE

  • institutional
  • group homes
  • apartments
  • own home with/without spouse
transition in health care
Transition in Health Care

Preparation

  • Encourage responsibility for own care
  • Should be planned, not crisis initiated
  • Identification of new adult provider(s)
  • Transition interview
  • Self-directed portable records
  • Teaching physical exam

Process

  • Evaluate readiness*
  • Record sharing and open communication
  • Overlap in care
  • Then let go………. but do not abandon
transition in health care barriers
Transition in Health Care Barriers
  • lack of readiness (teen, parent, doctors)
  • strong emotional attachments
  • reluctant adult care providers
  • few multidisciplinary options
  • lack of funding
guardianship the alternative to transition
Guardianship: The Alternative to Transition
  • Formal determination is now required at 18 years of age
  • Often triggered by surgery or a hospitalization
  • Requires legal action, not by default
      • petition must be filed
      • court hearing
  • Costs between $500 - $2000
guardianship
Guardianship
  • Is different from conservatorship of the estate
  • Responsible for all decisions except:
      • psychosurgery
      • electric shock therapy
      • sterilization
      • experimental treatments
  • If teen is borderline alternatives
  • Kinship is not the conclusive factor in determining the guardian
overview38
OVERVIEW
  • Medical Home for CWD
  • Working with the educational system
      • IFSP and early intervention programs
      • IEP and the education system
      • ITP and transition to adulthood
  • Accessing community resources
          • parent educ, advocacy, support
          • community agencies
          • respite and recreation
          • financial
  • Educating the PCP
community supports
Community Supports
  • In the family’s eyes, these are often more critical than medical services when caring for CWD
  • Lack of physician knowledge and expertise often the source of parental discontent
  • Surveys reveal physician-parent mismatch
levels of support
Levels of Support
  • Natural
      • family
      • neighbors
      • friends
  • Informal
      • clinic and IEP contacts
      • parent support groups
      • community agencies
      • Literature & Internet
  • Formal Entitlements
      • education (IEP and schools)
      • Medicaid, SSI
slide42

Formal

Informal

Natural

informal supports
Informal Supports
  • Parent Literature and Web sites
  • Parent Support Organizations
  • Peer Support Organizations
  • Community Agencies
  • Child Care
  • Respite and Respite Care Waivers
  • Recreation
  • Organized Sports
parent literature
Parent Literature
  • Exceptional Parent Magazine
      • Monthly publication (articles, advertisments)
      • Special inserts (spasticity, mitochondrial DO)
      • Family Library
      • Annual Resource Guide
      • Web site
      • Search and Respond
  • Brookes Publishing
  • Woodbine House
  • Medic Publishing
  • AACPDM List
cwd web sites for families
CWD Web Sites for Families
  • Ctr of Children with CI & D
  • Exceptional Parent Magazine
  • Family Voices
  • MUMS (parent support)
  • Natl Ctr for Youth with Disabilities
  • National Parent Network on Disabilities
  • NICHCY
  • Our Kids
overview46
OVERVIEW
  • Medical Home for CWD
  • Working with the educational system
      • IFSP and early intervention programs
      • IEP and the education system
      • ITP and transition to adulthood
  • Accessing community resources
          • parent educ, advocacy, support
          • community agencies
          • respite and recreation
          • financial
  • Educating the PCP
cwd web sites for families47
CWD Web Sites for Families
  • Ctr of Children with CI & D
  • Exceptional Parent Magazine
  • Family Voices
  • MUMS (parent support)
  • Natl Ctr for Youth with Disabilities
  • National Parent Network on Disabilities
  • NICHCY
  • Our Kids
parent support groups
Parent Support Groups
  • Disability-Specific Agencies
      • National: literature, research, referral

directories, conferences

      • Local: parent-to-parent support,

meetings, literature

  • Parent Training and Information Ctr
      • Disability rights
      • Advocacy training
  • Family Voices - political advocacy
  • SNAP (Special Needs Adocacy for Parents)
  • Internet Disability Chat Rooms
peer support groups
Peer-Support Groups
  • Friends Health Connection
  • Winners on Wheels
  • NICHCY
  • Disability-Specific Chat Rooms
  • Sib-Shops (206-368-4911)
informal supports50
Informal Supports
  • Parent Literature
  • Parent Support Organizations
  • Peer Support Organizations
  • Community Agencies
  • Child Care
  • Respite and Respite Care Waivers
  • Recreation
  • Organized Sports
respite benefits
Respite: Benefits
  • A break from the day to day care-taking responsibilities
  • Supports families in their parenting role
  • Improves stamina, re-energizes parents
  • Allows renewal of spousal relationships
  • Provides special time w/ normal children
  • CSHCN raised at home better outcome
  • CSHSN raised at home cost society less
slide52
1. Respite

2. Respite

3. Respite

4. Respite

5. Respite

6. Respite

7. Respite

8. Respite

9. Respite

10. Respite

respite varying needs
Respite: Varying Needs
  • High need
      • dual working parents
      • mobile families (military)
      • no extended family
      • medically fragile child - 24 hr monitoring
      • children with disabilities who do not sleep
      • aggressive children who bite or destroy
  • Low need
      • multiple adult siblings
      • large extended family, neighbors, friends
      • non-ambulatory(but healthy) child w/ CP/SB
respite models
Respite Models
  • Center-based
  • In-home
  • Family Co-op
  • Emergency
  • Hospitality
respite waivers
Respite Waivers
  • Goal: to provide the support needed

to raise the child at home

  • Eligibility: Dx and burden ---not $$$
  • Funding
      • Medically-fragile based funds
      • Cognitive-behavioral based funds
  • Wide variation among states
      • Agencies providing the funds / service
      • Eligibility criteria
      • Amount of funding available
  • Long-waiting lists
recreation
Recreation
  • Travel
      • Travelin Talk
      • Accessible Travel Magazine
      • Access-Able Travel Source
      • S.A.T.H.
  • Theme parks - EP directory
  • National parks
  • Camping*
  • Toys
travel resource information
Travel Resource Information

Travelin Talk: (615) 552-6670

Access-Able Travel Source: (303) 232-2979 www.access-able.com

Access To Travel Magazine: (518) 4394146

Wheelchair Getaways: (800) 642-2042

SATH (Society for the Advancement of Travel for the Handicapped):

(212) 447-7284 www.SATH.org

organized sports
Organized Sports
  • Special Olympics
  • Wheel Chair Sports
  • USA CP Athletic Assoc
informal supports59
Informal Supports
  • Parent Literature
  • Parent Support Organizations
  • Peer Support Organizations
  • Community Agencies
  • Child Care
  • Respite and Respite Care Waivers
  • Recreation
  • Organized Sports
slide60

Formal

Informal

Natural

formal supports
Formal Supports
  • Educational
  • Financial
      • Insurance - Medicaid
      • SSI
      • Special Needs Wills
  • Barrier free environments
  • Personal care assistants
  • Legal assistance
financial assistance
Financial Assistance
  • Health Insurance
  • SSI
  • Special Needs Will

(Supplemental Trust)

health insurance
Health Insurance
  • Medicaid:managed care
  • Title V:limited scope
  • TANF:replaced AFDC
  • SCHIP:# ofuninsured children < 200% poverty level

$50Bstate block grants

gov choice: MC or new

social security income
Social Security Income
  • Cash assistance program (995,000)
  • Welfare reform - Aug 97
  • New policy - redetermination
      • Categorical Diagnosis
      • Severe Functional Limitation
  • Termination of benefits:mean = 56%
      • Miss = 81%, Texas = 79%
      • Hawaii = 27% Calf = 39%
  • Appeal process: 18% 60% success
  • Remain MC eligible: lower asset criterion
special needs will supplemental trust fund
“Special Needs Will”Supplemental Trust Fund
  • Conventional wills that provide assets disqualify CwD for fed $$
  • Gov agencies can bill inheritance for services - current and past
  • Inheritance quickly exhausted
  • Siblings’ share also at risk
  • Language of a SNW must be clear -

“Trust is to provide extras -- over & above those resulting from fed $$”

formal supports66
Formal Supports
  • Educational
  • Financial
      • Insurance - Medicaid
      • SSI
      • Special Needs Will
  • Barrier free environments
  • Personal care assistants
  • Legal assistance
education of the pcp
Education of the PCP
  • Medical School Curriculum
  • Residency Training
      • Screening and surveillance
      • Strategies for working w/ educational sys
      • Community supports and strategy for accessing in future assignments
      • Parents as teachers
  • Exceptional Parent Magazine subscription
  • The DDRC at C.A.M.P.
summary
Summary
  • Medical Home for CWD
  • Working with the educational system
      • IFSP and early intervention programs
      • IEP and the education system
      • ITP and transition to adulthood
  • Accessing community resources
          • parent educ, advocacy, support
          • community agencies
          • respite and recreation
          • financial
  • Educating the PCP
the role of the french physician 15th century
The Role of the French Physician (15th century)
  • To cure sometimes
  • To relieve often
  • To comfort always
ad